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Re: Tired of my doctors and my health

@Tiny_leaf  Have you tried going to a physiotherapist? You probably won't need a referral to see one. My sister and I found that some of the physios we saw were better at identifying the cause of the pain and knowing how to treat it than the doctors we saw. My sister spent five and a half weeks in three hospitals for her pain without a diagnosis, but her physio suggested one when she got home and it turned out to be accurate. They can also run some tests or point you towards some forms of diagnostic imaging. That could be an option if you feel that you aren't getting anywhere with your doctors.

I get what you mean about exercise making the pain worse. Just bending my elbow ten times for one of my exercises felt like I was being shocked over and over again. But eventually, I could do it without much pain. There will probably be good days and bad days. Someone with my sister's condition said that when she was going through an intense rehabilitation program, there were days where she didn't want to take another step, but the team pushed her and she is now pain free and fully functioning. I think a graded plan and pacing yourself might help, such as starting with the easier, less painful exercises and then increasing the duration and difficulty once the pain and function of your legs gets better. A physiotherapist can probably help with this. We have to constantly remind my sister that in her case, increased pain when she exercises or tries to do normal movements doesn't necessarily mean that she's damaging her legs.

I would also suggest watching some videos of people who have gone through chronic pain. We found some videos online of people close to our age who went through rehabilitation and treatment for the same things. It was really helpful to watch them go from walking with crutches or being in a wheelchair to running up stairs unaided. Seeing their progress inspired us to keep going so that we could also have positive outcomes and beat our pain so that it did not control our lives any longer.

Also roughly how long have you had the pain? Sometimes particular suggestions may be more beneficial for chronic rather than acute pain.


Re: Tired of my doctors and my health

@WheresMySquishy yes I have. They helped me with knee pain caused by a specific issue, but not with a diagnosis. I don't think they did much in that area at all actually. 

I'm seeing a chiropractor, who helps a lot with spinal and referred pain, but can only do so much for muscular pain, and can't really do anything for my legs.

And yeah, gradual exercise sounds useful, but because I don't actually know what the problem is I don't know whether or not I'm causing damage or just pain when I walk/ do exercise. 

I know that the pain from exercise gets way worse a day after, and lasts for a few days, so I'm wondering if there's any inflammation going on, which could suggest something worse happening...


And even the thought of running up stairs made me flinch a little. It'd be really cool if I could do that without pain though. The area I live in has them everywhere..


And getting towards five years, it's been getting worse recently though.


My gp and I have been finally going through the (very, very slow) process of trying to figure out what's wrong with me this time, but he's still less than enthusiastic about me having anything other than pain relief in the meantime.

Soon I'll get to try to explain to him that the pain of walking is worse than how others will see me if I need a mobility aid...


Sorry about how rant-y I'm being...


Re: Tired of my doctors and my health

@Tiny_leafWow, that's crazy how you have had this pain for so long and your GP is only trying to work out what is wrong now. I feel so bad for you. I'm sorry that the other people you've seen haven't been able to help much. Sometimes, the system fails us. My first physio wasn't much help. Then I saw a second, more experienced physio who was also a hand therapist at another practice who gave me a different diagnosis and I got better through him. I did have some diagnostic imaging done, but they were unable to find any damage or abnormalities, which was good in a way as it meant I didn't have to have surgery and the problem could be reversible. My second physio explained that the problem I had wouldn't have shown up on particular tests.

I have heard that after having pain for so long, it becomes a disease itself, rather than being a symptom of an underlying problem. In chronic pain, people's brains can undergo central sensitisation, which can make them have more pain with less triggers or provocation. So people like my sister sometimes have to 'rewire' their brain and nervous system through treatment so that they feel less pain.


Re: Tired of my doctors and my health

I thought so too, though now I'm not even sure if he forgot me telling him, or if I forgot to tell him. I have so many appointments weekly, and have repeated the same information so many times that it can be hard to keep track sometimes... Smiley Frustrated

Especially since before I even get to try to reason with my doctors I have to reason with my parents before even getting an appointment. 


And yeah, I wouldn't be surprised if that is what happened with me too.

Unfortunately my mum has decided that's all it is, and it's apparently therefore just me overreacting to nothing, so she's now essentially telling me it's all in my head, and giving unwanted  "medical" advice for days/ weeks before booking an appointment. I'm slowly beginning to hate the word "yoga" when I just wanted an appointment...


And I'm glad your second physio helped, finding him must've been a relief after your first one.


Re: Tired of my doctors and my health

I'm sorry about the problems with your parents and your doctor. The whole thing sounds really frustrating.

My sister was told the same things by a lot of people, including some family members. It made her very upset. She was told by another patient with the same condition to not believe other people when they say that it is all in her head. I was watching a lecture by a doctor who has treated the condition before and he said that if any doctor suggests this then to see someone else. All pain is felt and perceived by the brain but that doesn't mean that all patients are faking or that they have something psychological going on with them, although cognitive-behavioural approaches and mindfulness can help with chronic pain. Even if no obvious physical cause is found, it is still good to rule out structural problems so that we can have peace of mind that it is nothing serious. Just having that reassurance actually helped us, and led to my sister receiving the correct diagnosis. Her condition also does not show up on any scans and was partially a diagnosis of exclusion.

Funnily enough, I was once seen by a specialist who actually suggested that I do a paid course by a Pilates coach without any healthcare qualifications as the main treatment! I nope'd out of there. My second physio is a Pilates coach and even he thought this suggestion was crazy and laughable.

I was lucky to have my second physio but we found that we really needed to 'shop around' for professionals to help us. It's crazy that people even need to do this. It should be that people can just go to the first professional and receive the correct diagnosis and treatment. I have family members who are in the medical profession and they say that standards have gone downhill.


Re: Tired of my doctors and my health

Ahh, diagnosis of exclusion are always "interesting". I hope at least she found a good doctor the first time. I've been through that process with some really shocking ones...


Also, "nope'd out of there" is possibly my favorite phrase now. Smiley Happy


And I know..! So many "professionals" seem to be relying on information they half-listened to ten years ago. There were two who apparently knew less about my condition than I did, and were determined to convince me that they were right, even if it meant contradicting the DSM-5 and the World Health Organization. I couldn't get out of there fast enough...


Also, do you have any tips for professional shopping? Relying on luck when choosing doctors has been less than brilliant for me...



Re: Tired of my doctors and my health

My sister has gone through several different doctors and we've yet to find her one we like. Like you, she has also seen a lot of shocking ones who didn't know what to do at all. She is currently waiting for a rehabilitation admission but it has been delayed for months. I told her that I will believe in the people caring for her when I see that she is making progress with her treatment and her symptoms are decreasing. In her situation, we've seen a lot of talk but hardly any action. Smiley Sad

I'm pretty sure the crazy Pilates doctor was actually paid to endorse or promote that course. Smiley LOL

I hate when doctors don't admit that they are wrong or don't know what to do. I don't understand why they don't just refer people on if they don't know what the problem is or how to treat it. Sounds like you had a bad experience and were stuffed around a lot. Smiley Sad

We found it hard to tell if a doctor or professional would be good before we saw them, but we picked up on these red flags that we needed to see someone else:
- They provide all or most of their patients with exactly the same treatment.
- They discourage you from contacting other doctors or professionals or getting a second opinion. I really don't understand this. If they are confident about their diagnosis and treatment plan, why would they have a problem with a second opinion? One of my sister's doctors kept making up various excuses to not contact the surgeon who operated on her. We believe he was afraid of getting into trouble because she got worse after his treatment. He had told her that he would consult with her surgeon first before performing a procedure on her, but apparently never did, and we only found this out after we contacted the surgeon anyway.
- They claim that there is some sort of conspiracy with the medical profession and that only a select few recognise your 'diagnosis' and how to treat it.
- They keep changing their mind about the diagnosis and treatment. The same doctor prescribed my sister some new medication and briefly mentioned the possibility of having a medical procedure as a last resort. The next day, he booked her in for the procedure for four days later, without explaining why she was having it or telling her what exactly she was having done. Even after that, he kept changing his mind about what medications he should put her on or which hospital she should go to, often multiple times a day.
- They are easily swayed by what other medical professionals tell them instead of conducting their own investigations and forming their own opinion.
- They claim to diagnose a condition without doing any examinations of the affected body part, usually within only a few minutes of first seeing them.
- The treatment seems to be controversial, is new or doesn't have much evidence. 'New' can mean that the treatment is unproven or still being tested.
- They say that the pain could be psychological because the tests did not find anything.
- They do a procedure or start you on a new treatment but then don't want to make a follow-up appointment or see you again. My sister's doctor was like this and it was really baffling.
- They interrupt what you're saying or talk over you as if they don't want to hear what you have to say.
- They blame your symptoms on your weight without investigating them.
- The professional keeps looking at a screen or keeps going in and out of the room. At our old physiotherapy place, the physios would spend 5 minutes with us, then leave us alone to do the exercises as they spoke to other patients, without checking to see if we were doing them correctly, even though we had booked one hour sessions.
- They give inappropriate unsolicited advice. I'm constantly surprised by the things that some doctors say to patients.


Re: Tired of my doctors and my health

Ugh, that must suck for her...

I hate it when stuff like that happens, I don't really like waiting around for doctors to actually do their job.

And yep, I've been in one of those lots of talk, no action situations. It seemed good at first since I was originally in a no talk, no action situation...

"Dr Google" and I have become much closer friends than is ideal, but sometimes my doctors need me to do their job for them.

I have found that when I suggest diagnostic screenings, a likely diagnosis and a fairly detailed treatment plan they often are surprised enough that they remember they're the ones meant to be doing that. Is that possible for your sister?


And I don't understand it either... they didn't even refer me to anyone, they just pretended I was better so that they could say I was fixed and get rid of me. I would be more angry about that, but it did give me the opportunity to never go there again.


And thank you for the red flag list! They will be really helpful I think.


And I'm glad you escaped the crazy Pilates guy, he sounds like he would've been... difficult to work with. 


And yeah, unsolicited/ off topic advice was the bane of my early treatment, however I did learn that to fix the anxiety causing me to sleep less, I needed to get more sleep. I was there because of depression, but that wasn't going to hold back her endless wisdom... Smiley Frustrated


Re: Tired of my doctors and my health

@WheresMySquishy thanks for sharing so much about your experiences, the red flag list is super helpful. I've also found physios can be really great for chronic conditions and helping you develop a stronger mind body connection to the area causing problems so you can have more control over pain and sensitivity. That's so interesting what you shared about about central sensitisation, this is something my physio helped me with but I hand't heard about the official term Smiley Happy

@Tiny_leaf ugh how frustrating when you have to tell the 'professional' about the condition you have because they don't understand it. My tips for shopping around are to read about them online and look at what their area of interest or specialisation are and I sometimes ask the receptionist who they would recommend or who is popular Smiley Very Happy Also if you happen to know any medical professionals personally that you trust (eg I know a senior nurse) you could ask them if they have any recommendations Smiley Happy

Re: Tired of my doctors and my health

@Tiny_leaf I find it really hard opening up to medical professionals only to discover that they are unhelpful or only make you more stressed out than you already are! One of my sister's doctors came to see her today and they hadn't heard of the conditions she was diagnosed with by the hospital. We had to explain them ourselves. Smiley Indifferent

Yep, we are often the ones suggesting treatment plans, specialists, and diagnoses rather than the professionals involved in my sister's care. A patient in the hospital room next door to my sister suggested that she had a particular condition as they happened to have it as well. But we kept asking her specialist at the time whether she had it and he kept saying no... Only for her to be diagnosed with it by another specialist. We have actually had to make it known (loudly) to her doctors that we weren't satisfied with the complete lack of action being taken. We were left to organise our own professionals to see and treat her because no one from the hospital had been assessing or treating her as she waits to be admitted and she was getting worse. I think they only started providing more support and getting people to come and see her because we complained. I feel like the system still needs a lot of improvement.

Wow, that professional sounds pretty dodgy. Sometimes I feel like I've dodged a bullet by not coming back to a doctor or professional I didn't like. I feel like a lot of them just want the patient to be 'fixed' quickly or just perform a procedure and be done with seeing the patient.

@May_ I agree with the mind-body connection that physios can sometimes help with. Although I originally came in with pain in my arms, my second physio also helped me with my coordination skills towards the end of my treatment. He would get my legs and arms working together which helped to minimise the pain in my arms more than just working on my arms alone. It was really helpful. Like you, we have also found doctors and other professionals through our friends' recommendations or by knowing other doctors.